Last week (on March sixth) we had a followup MRI for Vince at Children's Hospital. It was three months from his surgery and was his first follow-up MRI post surgery (besides the one they did the next day).
We had great results! The tumor shows no signs of returning! The brain has moved a little bit back into place, although he'll always have somewhat of a "hole" in his brain where the tumor was.
The MRI itself went smoothly, too. Vince has to be anesthetized for it.
We will follow up with another MRI in six months.
Friday, June 13, 2014
Saturday, April 26, 2014
Haircut and Drooling
Vince has started to drool. Again.
As a baby, Vince was never really a drool-er. Starting a little after he turned two, we noticed he was drooling. His drooling increased and increased. We never thought much about it. His drooling seemed to be when he was doing speech or playing, when he was concentrating. After his surgery, the drooling stopped. Like stopped dead on, not a gradual stop. Kevin linked it and we thought that the drooling possibly had to do with the tumor. When I emailed Dr.Neurosurgeon to make him aware of this, he said he would not have thought of drooling as a symptom from the tumor, unless it was causing some difficulty with control or sensation or movement of his mouth. He also said the timing made sense, but drooling was a "new one" for him.
Vince has started to drool a little bit again. I don't know if I'm paranoid, but I'm scared.
Vince has a followup MRI in June.
Please continue to pray for Vince.
Tuesday, April 22, 2014
The Miracle of Neurosurgery
As I have talked about on here, as you can imagine, as I have shared with you, Vince's tumor totally caught us by surprise. My husband and I went through an entire range of emotions, from the discovery to the surgery and recovery.
Neurosurgery sounds like a horrible prospect- cut into scalp, cut off a piece of skull, cut into brain, remove the golf ball and put it all back together again. I was shuttering at the thought of it, and rightly so. Neurosurgery should not be taken lightly.
I was praying for a miracle. I even dappled into some alternative treatments, ones that even if they did nothing wouldn't harm. Father came over and blessed Vince with a relic of the True Cross. The Other Father also gave Vince more special blessings. People prayed. All people prayed. Our family of course prayed. Our friends and loved ones prayed. Prayer warriors prayed. Those who were not inclined to pray prayed. Orders of nuns and monks prayed. I'm sure St. Vincent de Paul, Uncle Vince and GreatGrandpa Vincenzo all prayed, too.
I thought we could have a miracle. Of course, I planned for his medical treatment. (We even took him 500 miles away for a second opinion.)
I was adamant about getting Vince a second MRI before surgery. I feared they would get into his brain and not find a tumor. I thought perhaps the alternative treatment had worked. I thought the prayers had worked. I thought maybe they made a mistake with the original MRI or they mixed it up. In any case, I was not going to let them cut my baby's brain open without a second peak first.
The first doctor that we saw for a second opinion here in Colorado refused to do a second MRI. The Kansas City doctor agreed to do the second MRI. I would have walked there if I had to. The actual neurosurgeon, Dr.Neurosurgeon, did order a "planning MRI". It was a mapping MRI to hook into his computer and guide him during the operation. We did it two days before surgery. That's OK, it was still another peak into his brain before surgery.
When we had a consult with Dr.Neurosurgeon Ash Wednesday afternoon, two days before surgery, Vince had just had his MRI. They had the preliminary results back right then. The tumor was still there. There wasn't a miracle. The alternative stuff didn't work. They hadn't mixed it up. I was disappointed. My heart was in my mouth. I was sick. I was expecting a miracle.
We went through with the surgery, as planned. For me, it almost seemed like I was going through the motions of it, a normal thing during stressful times.
They had told us that Vince would be in the hospital 5-7 days for recovery and perhaps a month for intensive therapy (kind of like rehab for old people). They said Vince might have neurological speech issues. They said Vince might have motor issues on his right side since the tumor was on the left. They said they weren't sure if they'd get all of the tumor out. They said they didn't think it was cancer, but they weren't sure what it was.
I wanted a miracle. I didn't want to go through all that. I didn't want to put my baby through that.
Let me tell you this... Neurosurgery is a miracle!
Yes, neurosurgery is a miracle. We were praying for a miracle, and we got it, just not the way I would have chosen. But that's OK. We got a miracle. Even discovering the brain tumor was a miracle, too.
Vince did excellently in his surgery. He did excellently in his recovery. Vince went home from the hospital on the third day. He did not and does not have neurological issues. He seems to be himself. His speech seems about where it was before the surgery. He has no motor issues. They got all the tumor out. It is not cancer. Vince is the precious rascal two year old I know and love.
My wonderful brother-in-law stayed with us for the surgery. He kept my sanity. My wonderful priest came and gave Vince another special blessing immediately before surgery. Everyone kept up their diligent prayers. Dr.Neurosurgeon did an excellent job. This all is what I call a miracle. God uses doctors and hospitals for miracles, too, and neurosurgery especially is a miracle.
Thank you, Oh God, for this miraculous healing of my Vince.
(Linked to A Mama's Story.)
Neurosurgery sounds like a horrible prospect- cut into scalp, cut off a piece of skull, cut into brain, remove the golf ball and put it all back together again. I was shuttering at the thought of it, and rightly so. Neurosurgery should not be taken lightly.
I was praying for a miracle. I even dappled into some alternative treatments, ones that even if they did nothing wouldn't harm. Father came over and blessed Vince with a relic of the True Cross. The Other Father also gave Vince more special blessings. People prayed. All people prayed. Our family of course prayed. Our friends and loved ones prayed. Prayer warriors prayed. Those who were not inclined to pray prayed. Orders of nuns and monks prayed. I'm sure St. Vincent de Paul, Uncle Vince and GreatGrandpa Vincenzo all prayed, too.
I thought we could have a miracle. Of course, I planned for his medical treatment. (We even took him 500 miles away for a second opinion.)
I was adamant about getting Vince a second MRI before surgery. I feared they would get into his brain and not find a tumor. I thought perhaps the alternative treatment had worked. I thought the prayers had worked. I thought maybe they made a mistake with the original MRI or they mixed it up. In any case, I was not going to let them cut my baby's brain open without a second peak first.
The first doctor that we saw for a second opinion here in Colorado refused to do a second MRI. The Kansas City doctor agreed to do the second MRI. I would have walked there if I had to. The actual neurosurgeon, Dr.Neurosurgeon, did order a "planning MRI". It was a mapping MRI to hook into his computer and guide him during the operation. We did it two days before surgery. That's OK, it was still another peak into his brain before surgery.
When we had a consult with Dr.Neurosurgeon Ash Wednesday afternoon, two days before surgery, Vince had just had his MRI. They had the preliminary results back right then. The tumor was still there. There wasn't a miracle. The alternative stuff didn't work. They hadn't mixed it up. I was disappointed. My heart was in my mouth. I was sick. I was expecting a miracle.
We went through with the surgery, as planned. For me, it almost seemed like I was going through the motions of it, a normal thing during stressful times.
They had told us that Vince would be in the hospital 5-7 days for recovery and perhaps a month for intensive therapy (kind of like rehab for old people). They said Vince might have neurological speech issues. They said Vince might have motor issues on his right side since the tumor was on the left. They said they weren't sure if they'd get all of the tumor out. They said they didn't think it was cancer, but they weren't sure what it was.
I wanted a miracle. I didn't want to go through all that. I didn't want to put my baby through that.
Let me tell you this... Neurosurgery is a miracle!
Yes, neurosurgery is a miracle. We were praying for a miracle, and we got it, just not the way I would have chosen. But that's OK. We got a miracle. Even discovering the brain tumor was a miracle, too.
Vince did excellently in his surgery. He did excellently in his recovery. Vince went home from the hospital on the third day. He did not and does not have neurological issues. He seems to be himself. His speech seems about where it was before the surgery. He has no motor issues. They got all the tumor out. It is not cancer. Vince is the precious rascal two year old I know and love.
My wonderful brother-in-law stayed with us for the surgery. He kept my sanity. My wonderful priest came and gave Vince another special blessing immediately before surgery. Everyone kept up their diligent prayers. Dr.Neurosurgeon did an excellent job. This all is what I call a miracle. God uses doctors and hospitals for miracles, too, and neurosurgery especially is a miracle.
Thank you, Oh God, for this miraculous healing of my Vince.
(Linked to A Mama's Story.)
Monday, March 24, 2014
Thursday, March 20, 2014
Deja Vous All Over Again
Vince is recovering wonderfully! He amazes me. God amazes me in His healing abilities.
We had the stomach virus pass through our house this week. This is not fun, especially if you can imagine that we have five children five and under.
Benny, Vince's baby brother who is currently five months old, seemed to have it the worst. Like totally the worst. He just would not. hold. anything. down...
To cut a long story short, we are now in the PICU at Children's Hospital with Benny. We are just two rooms down from the room Vince was in.
It's like Deja Vous all over again, and it was just when I thought things were returning to normal...
Please continue to pray for Vince and pray for Benny, too.
We had the stomach virus pass through our house this week. This is not fun, especially if you can imagine that we have five children five and under.
Benny, Vince's baby brother who is currently five months old, seemed to have it the worst. Like totally the worst. He just would not. hold. anything. down...
To cut a long story short, we are now in the PICU at Children's Hospital with Benny. We are just two rooms down from the room Vince was in.
It's like Deja Vous all over again, and it was just when I thought things were returning to normal...
Please continue to pray for Vince and pray for Benny, too.
Tuesday, March 18, 2014
Pilomyxoid Astrocytoma
Today Dr.NeurOncologist called with the final pathology results.
Vince's tumor is a Grade II Pilomyxoid Astrocytoma. Dr.NeurOncologist puts it at a 5% chance of recurrence. Pilomyxoid Astrocytomas are a relatively "new" discovery. Most occur in other areas of the brain. Dr.NeurOncologist said that because it was completely resected (doctor speak for removed), Vince has a lot better prognosis than other patients who have the same type of tumor in the usual areas since the tumor usually cannot be completely removed in these other brain areas.
It is an extremely unusual type of tumor for Vince's genetic disease, but Dr.NeurOncologist still thinks it is from it. I found two academic peer reviewed papers online that said there were only two cases of this type of tumor in patients with Vince's genetic disease. Ain't we special...
So we'll be followed by Dr.NeurOncologist... Vince will have scans every so often to make sure it doesn't come back... It ain't over... Monitoring for recurrence will be a way of life for us...
Vince's tumor is a Grade II Pilomyxoid Astrocytoma. Dr.NeurOncologist puts it at a 5% chance of recurrence. Pilomyxoid Astrocytomas are a relatively "new" discovery. Most occur in other areas of the brain. Dr.NeurOncologist said that because it was completely resected (doctor speak for removed), Vince has a lot better prognosis than other patients who have the same type of tumor in the usual areas since the tumor usually cannot be completely removed in these other brain areas.
It is an extremely unusual type of tumor for Vince's genetic disease, but Dr.NeurOncologist still thinks it is from it. I found two academic peer reviewed papers online that said there were only two cases of this type of tumor in patients with Vince's genetic disease. Ain't we special...
So we'll be followed by Dr.NeurOncologist... Vince will have scans every so often to make sure it doesn't come back... It ain't over... Monitoring for recurrence will be a way of life for us...
Saturday, March 15, 2014
Pathology
So what is the pathology? many people have asked.
On Thursday, we went back up to Children's Hospital to see the neuro-oncologist (and also went to a follow-up appointment with the neurosurgeon's PA). We had originally seen Dr.NeuroOncologist when we had first received Vince's diagnosis. Thursday, Dr.NeuroOncologist had printed out scans from the MRI from before and after the surgery. Vince's surgery was a success! Dr.Neurosurgeon had gotten all of the tumor out! The area that the tumor used to be in was now filled with fluid, Dr.NeuroOncologist said, and showed us on the scan.
Dr.NeuroOncologist was unsure of the tumor was Grade I or Grade II. He'll know in another ten days when they are finished with the pathology. If it is Grade I, Dr.NeuroOncologist gave the tumor a 2% chance of growing back. If it is a Grade II, Dr.NeuroOncologist gave the tumor a 5% chance of growing back. (I don't have much confidence in statistics, because even with Vince's genetic disease, his chance of a brain tumor to start with was only less than 1%.)
Vince will get a follow-up MRI in three months, another one six months after that and then yearly from then on. They will just be following him and monitoring him to make sure he is OK.
Dr.NeuroOncologist then gave Vince a neurological examination which Vince passed with flying colors. He also checked Vince's incision and asked us some questions regarding his demeanor, appetite and such.
Later that day we saw the NeurosurgeryPhysicianAssistantLady. That was a waste of time, really. She looked briefly at his incision. She asked us the same questions about Vince's appetite and such. She did not do any neurological testing. Her appointment was 4 hours after the first. We had to actually go back to the hospital for it. It was a waste of time, really.
Both the NeurosurgeryPhysicianAssistantLady and Dr.NeuroOncologist agree that Vince is doing fantastic. I agree, too, and I know it is all of your prayers.
I made a follow-up appointment with Dr.Neurosurgeon for April. If Vince continues to do well, he'll be released from Dr.Neurosurgeon's care then.
Amazing.
Neurosurgery is truly a miracle.
On Thursday, we went back up to Children's Hospital to see the neuro-oncologist (and also went to a follow-up appointment with the neurosurgeon's PA). We had originally seen Dr.NeuroOncologist when we had first received Vince's diagnosis. Thursday, Dr.NeuroOncologist had printed out scans from the MRI from before and after the surgery. Vince's surgery was a success! Dr.Neurosurgeon had gotten all of the tumor out! The area that the tumor used to be in was now filled with fluid, Dr.NeuroOncologist said, and showed us on the scan.
Dr.NeuroOncologist was unsure of the tumor was Grade I or Grade II. He'll know in another ten days when they are finished with the pathology. If it is Grade I, Dr.NeuroOncologist gave the tumor a 2% chance of growing back. If it is a Grade II, Dr.NeuroOncologist gave the tumor a 5% chance of growing back. (I don't have much confidence in statistics, because even with Vince's genetic disease, his chance of a brain tumor to start with was only less than 1%.)
Vince will get a follow-up MRI in three months, another one six months after that and then yearly from then on. They will just be following him and monitoring him to make sure he is OK.
Dr.NeuroOncologist then gave Vince a neurological examination which Vince passed with flying colors. He also checked Vince's incision and asked us some questions regarding his demeanor, appetite and such.
Later that day we saw the NeurosurgeryPhysicianAssistantLady. That was a waste of time, really. She looked briefly at his incision. She asked us the same questions about Vince's appetite and such. She did not do any neurological testing. Her appointment was 4 hours after the first. We had to actually go back to the hospital for it. It was a waste of time, really.
Both the NeurosurgeryPhysicianAssistantLady and Dr.NeuroOncologist agree that Vince is doing fantastic. I agree, too, and I know it is all of your prayers.
I made a follow-up appointment with Dr.Neurosurgeon for April. If Vince continues to do well, he'll be released from Dr.Neurosurgeon's care then.
Amazing.
Neurosurgery is truly a miracle.
Monday, March 10, 2014
VINCE IS HOME!!!!!
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